How our lives have been touched by preeclampsia, cerebral palsy, epilepsy, feeding tubes, failure to thrive and whatever else comes our way

Friday, April 9, 2010

A Return Trip From The Land Of Denial

Anna's surgery is now officially scheduled for May 10. The scheduling lady was so nice about it and very respectful of the fact that I was changing the date based on my parent's wishes. She said she is a grandmother and would love if her child would be so obliging. I was proud of my decision to change the date and feel like it was the right thing to do for so many reasons. Our insurance company called today to talk with me about the surgeries. It was a totally random phone call. She wanted to know if I understood the surgery and all it entailed, where I would be staying, if I needed counseling, if we had told Anna about the surgery...the list goes on. I tried to be polite but really 1. Would I consent to 2 surgeries on my child that I did not fully understand? Um, NO! 2. My kid is 2 so I'm thinking I should probably stay at the hospital with her, mmm kay. I am not really sure it is well thought of and/or appropriate for a 2 year old to be left alone 75 miles from home after a surgery. 3. Um, no counseling needed here but thanks for telling me about the benefit that my plan offers- since I already used it earlier. 4. And no, I did not tell Anna. I am thinking that she wouldn't understand and furthermore probably does not care. I tried very hard and was successful at being polite to the lady but if this is adding to the rising cost of health care then I am pretty sure it is something I could do without. I appreciate the thought, but really, it isn't necessary. Then I wondered if there are people who do not really understand and if this service is necessary for them and then that really had me frightened so I just quit thinking about it.

In an unsuccessful attempt to go back to the land of denial and make believe I tried to go up by 10 ml (that is 10ml total not 10ml/hr) on Anna's feeds last night. For those non-metric people that is 1/3 of an ounce or 2 teaspoons. So Anna got 360 ml at 70ml/hr which is just a tad over 5 hours. When I disconnected her that child looked she had swallowed a watermelon. My decision was reaffirmed. The surgery is necessary. Luckily the volcano did not explode although I was sure it would. I kept waking up expecting to smell that wretched regurgitated Peptamen smell but never did. There is no good reason she should not be able to tolerate 2 1/3 ounces an hour other than the fact that her plumbing just isn't right.

I think sometime back I had posted about Anna sleeping in her own bed and in her own room. That only lasted a short time, like maybe a week or two, and then she was back in our room. So she has been in the middle of Kenneth and I ever since. One night she was gone to Kenneth's mom's and I actually had room in the bed and slept so good. I realized how much her being in our bed was disrupting my sleep. I had this bright idea to move her bed into our room and put it at the foot of our bed. We had to kind of make it a little ghetto so that we could still see the tv because I cannot fall asleep without it on. So her ghetto-fied bed is now in our room. I really don't care how it looks because she is sleeping better and so am I. She loves her own bed and is waking less and less. She only wakes up to tell us she is "code" (cold) or wants a "gink" (drink). We now leave a drink of water in her bed with her and have started putting warmer jammies on her at night so she is less "code." Carly is excited too because now on the nights Kenneth is gone it is just she and I.

The Cuties

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this....When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.